Tuesday, April 27, 2010

Smiles in church...

Brodie helps out in church by holding Ashley when we stand up...she loves it of course!

The girls have been enjoying their standers. Hope does quite well, despite a little bit of trouble with her secretions. They go in their standers for about 45 minutes, once a day. You can see that Hope is pretty tall, catching up to Ashley it appears!

Tuesday, April 20, 2010


Aren't they sweet? Sleeping kids have a special kind of sweetness. We had a great weekend, the girls are doing fairly well. They are sleeping a bit more, because both of them are having more seizures. Maybe it's all the fresh air? We have had the windows open a lot. Ashley is doing great with her medication increase, very comfortable when we hold her, and sometimes comfortable when we leave her in the kidkart.
I'm 19 weeks into the pregancy and I can finally feel baby moving. Very exciting. Tonight, Brodie asked me what we are going to call the baby. So, we had a fun discussion about potential names, and then I informed him that he can't tell anyone our potential names. Too fun.

Thursday, April 15, 2010


Wow, what an amazing shout of support and encouragment. Thank you so much to everyone who has encouraged us with comments and emails and hugs. I liked Alex's comment..."I think people are genuinely happy for us!"...which was stated with a look of wonder.

I have felt so much hope and happiness during this pregancy and it is so great to finally share that with everyone. It has been a very easy pregancy so far, and I haven't had any trouble keeping up with things around here. I had a bit of night-time nausea in the beginning and started Diclectin for that, which was very effective. Other than that, no issues.

Just to 're-cap' for anyone who wonders. With each pregnancy, there is a 1 in 4 chance of the baby being affected by the same disorder as the girls. It isn't linked to gender, and there is no way for us to find out ahead of time. If we had pursued it years ago, we could have gone through the expensive process to find the genetic marker that would allow us to check the baby for that marker via amniocentesis. We still don't feel the necessity of knowing during the pregancy, we would much rather have hope for the future. When the baby is born, a urine sample will be taken, and we'll know within 7 days if the baby is affected.

We had a wonderful Easter, sharing our news with our families. You can see some pics below. The girls travelled very well (hopefully that means we can get out a lot during the summer). Ashley has had a few more medication increases and she is doing MUCH better. She still wants to be held a lot, but has many more happy, quiet moments.

Hope is doing fantastic. She had a few days of cooing, smiling and almost laughing when I played patty cakes with her. Shocking! The last couple days she hasn't been as energetic because the seizures tripled in number and kept her drowsy.

We had a productive day of appts yesterday. Hope got her first stander, and I'll hopefully have some pics soon. Ashley had her KidKart re-adjusted, and her feet/leg splints adjusted. I also found real shoes for the girls, which is truly a landmark. The girls feet are rather puffy and their toes curl under, so it's hard to find roomy shoes that fit their 'fat' little feet, and allow me to pull their toes flat. I can't imagine trying to stand with your toes curled under.

In the pics below, you'll see my Dad holding Ashley, while Brodie tries to read a story to his cousin, Ian. Ian couldn't bring himself to sit still though! My mom is holding Hope is the next one.

Tuesday, April 6, 2010


So...we've had another unexpected occurance in our lives. We are pregnant again! Due in September!

We didn't plan on getting pregnant, in fact, we were very careful to avoid it. We realize that many people will think we're 'idiots' for "allowing" this to happen, but we can't stop them from thinking what they will. Apparently God's plan is more powerful than ours. It's taken a bit of time to adjust to the idea. Despite that, we are feeling very blessed by God's gift to us and we are feeling a lot of hope and joy at the potential change this child will bring to our family.

We are anticipating that some reactions will not be positive and we hope to encourage everyone to be joyful for us. I wonder if everyone realizes that although our lives our quite 'different' because of our girls, it is our normal. We've lived these ups and downs for years now, and it really has become normal. We still enjoy wonderful days, evenings out, playdates with friends and hockey games with Brodie. We aren't discouraged when others talk of their 'normal', in fact we just join in and talk about our 'normal'. What I'm trying to say is...'Don't feel bad for us'...and please don't 'cringe' at the thought of another 'burden'. This baby will be a blessing whether it is healthy or not.

The girls have been a blessing in our lives, despite the obvious challenges. It has become increasingly clear that our purpose here on earth is not to seek pleasure or succeed or even to be happy, but instead to love. And the girls, in particular, have taught us how to love unconditionally. They give nothing in return, and yet loving them is a blessing. My day is fulfilled when I give, but I am often feeling deprived when I focus on what I have not been given. It seems that we have to learn this lesson over and over again in life. I know I'm sounding preachy...sorry about that. Hope I didn't bore you, but it's hard to put into words and I really feel that some people 'hurt' for us, and I want to put them at ease. We have a healthy relationship (obviously), an active, healthy son, two beautiful, cuddly daughters, a safe home (adapted for our needs) and a wonderful support network.